Giving voice to older adults living with frailty and their family caregivers: engagement of older adults living with frailty in research, health care decision making, and in health policy.
Giving voice to older adults living with frailty and their family caregivers: engagement of older adults living with frailty in research, health care decision making, and in health policy.
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为体弱老年人及其家庭照顾者发出声音：让体弱老年人参与研究、医疗保健决策和卫生政策。
DOI：
10.1186/s40900-016-0038-7
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发表时间：
2016
影响因子：
--
通讯作者：
Muscedere J
中科院分区：
文献类型：
--
作者：
Holroyd-Leduc J;Resin J;Ashley L;Barwich D;Elliott J;Huras P;Légaré F;Mahoney M;Maybee A;McNeil H;Pullman D;Sawatzky R;Stolee P;Muscedere J
在任何情况下，家庭照顾者(定义为包括家庭、朋友和其他社会支持系统)在参与和增强脆弱老年人的能力方面发挥重要作用。参与机会需要灵活(例如，地点、时间、类型)。激励研究人员和公民参与(财政和其他方面的)可能是必要的公民、健康和社会护理提供者和研究人员参与实践的教育和培训以患者为中心的护理方法应考虑脆弱个体的具体需求，包括临终关怀和高级护理规划影响政策的多种方式，包括参与机构、地区、与卫生和社会保健有关的省级或国家委员会。这篇论文讨论了让生活在虚弱中的老年人和他们的家庭照顾者参与进来。虚弱是一种将个人置于健康状况不佳和死亡风险较高的状态。了解一个人是否虚弱很重要，因为虚弱的人的治疗和保健选择可能与其他人不同(即，谁是健康的)。在这篇综述中，我们从三个方面讨论了让老年人参与到脆弱生活中来的策略和障碍：研究、健康和社会护理以及政策。我们利用已发表的文献、专家意见和利益相关者(包括公民)的意见制定了这项审查。让虚弱的老年人参与进来将是一项挑战，因为他们的健康状况脆弱--但这是可以做到的。针对这一弱势群体的具体考虑点包括：老年人是加拿大人口中增长最快的部分，导致更多的人生活在虚弱之中。尽管衰老和虚弱不是同义词，但虚弱的人的比例随着年龄的增长而增加。脆弱不是由一种单一的条件来定义的，而是一种健康状态，其特征是身体、精神或社会衰退、健康状况恶化和死亡的风险增加。认识到脆弱性很重要，因为及早发现可以使项目实施专注于预防和管理，以减少未来的住院率，改善结果，并增强活力和生活质量。尽管虚弱的老年人是卫生保健资源的重要使用者，但他们的投入在研究、卫生保健决策和卫生政策制定中的代表性不足。因此，让虚弱的老年人及其家庭照顾者参与不仅是一项道德义务，而且他们的投入尤其重要，因为卫生和社会护理系统从侧重于单一疾病演变为那些考虑到伴随虚弱而来的复杂和长期需求的系统。在这篇综述中，我们从研究、健康和社会护理以及政策三个方面总结了现有文献中涉及到的老年虚弱患者及其家庭照顾者。我们讨论参与的战略和障碍，以及道德和文化因素及其影响。尽管这项审查主要集中在加拿大，但它很可能广泛适用于发达国家的许多卫生系统，在这些国家，老龄化和虚弱构成了重大挑战。
In any setting, family caregivers (defined to include family, friends, and other social support systems) play an important role in engaging and empowering older adults living with frailty Engagement opportunities need to be flexible (e.g., location, time, type) Incentivizing engagement for researchers and citizens (financial and otherwise) may be necessary The education and training of citizens, health and social care providers, and researchers on engagement practices Patient-centered care approaches should consider the specific needs of individuals living with frailty including end-of-life care and advanced care planning Influencing policy can occur in many ways including participating at institutional, regional, provincial or national committees that relate to health and social care. The paper discusses engaging older adults living with frailty and their family caregivers. Frailty is a state that puts an individual at a higher risk for poor health outcomes and death. Understanding whether a person is frail is important because treatment and health care choices for someone living with frailty may be different from someone who is not (i.e., who is fit). In this review, we discuss strategies and hurdles for engaging older adults living with frailty across three settings: research, health and social care, and policy. We developed this review using published literature, expert opinion, and stakeholder input (including citizens). Engaging frail older individuals will be challenging because of their vulnerable health state - but it can be done. Points of consideration specific to engaging this vulnerable population include: Older adults are the fastest growing segment of Canada’s population resulting in an increased number of individuals living with frailty. Although aging and frailty are not synonymous the proportion of those who are frail increases with age. Frailty is not defined by a single condition, but rather a health state characterized by an increased risk of physical, mental, or social decline, deterioration of health status, and death. Recognizing frailty is important because earlier detection allows for program implementation focused on prevention and management to reduce future hospitalization, improve outcomes, and enhance vitality and quality of life. Even though older adults living with frailty are significant users of health care resources, their input is under-represented in research, health care decision making, and health policy formulation. As such, engaging older adults living with frailty and their family caregivers is not only an ethical imperative, but their input is particularly important as health and social care systems evolve from single-illness focused to those that account for the complex and chronic needs that accompany frailty. In this review, we summarize existing literature on engaging older adults living with frailty and their family caregivers across three settings: research, health and social care, and policy. We discuss strategies and barriers to engagement, and ethical and cultural factors and implications. Although this review is mainly focused on Canada it is likely to be broadly applicable to many of the health systems in the developed world where aging and frailty pose important challenges.